Speakers

Emcee

Robert Smith

Robert Smith (he/him)
Co-Chair of The Canadian Health and Wellbeing in Developmental Disabilities Conference,
Community Living Ontario Council Treasurer,
Member of Community Living Respite Northumberland,
Chair of Self Advocates Group Northumberland

Twitter / LinkedIn / Instagram / Facebook

Robert Smith, a self-advocate, from Port Hope, Ontario is a member of the Council for Community Living Ontario. Robert is passionate about advocating for people who have an intellectual disability. Robert firmly believes that people can do anything they put their mind to regardless of their challenges. What he enjoys about advocacy is being able to speak his mind and ensure the voices of people who have a disability are heard.

Robert is stepping out of his comfort zone and challenging himself in the role of emcee. As a youth, and adult, being bullied and cyberbullied with blackmail has left him with significant trauma. Robert has taken advantage of the medical resources available to him which has opened his eyes to the inequity of health care for people who are marginalized. Robert is choosing to push himself to speak out on behalf of people who are struggling with mental health challenges. It is his opinion that people have strength within themselves, people are interconnected, and when we share, we grow together, and together we are stronger.

Robert is active in his community, he is an on-line radio DJ, an employee with Home Depot and the Municipality of Port Hope. Robert is an active member of the Staying Connected Network, which encompasses self-advocates from around the world. Robert has received many more awards in sports than there would be space to list here. His favourite sport is sledge hockey and he has recently been notified that his team will be participating in a paralympic event.

Keynote Presentation

International Adult Leadership Collaborative (ALC) FASD Changemakers
Twitter / Instagram / Podcast / Website

The International Adult Leadership Collaborative (ALC) of FASD Changemakers is a renowned group of citizen researchers and experts who each have FASD. It is made up of CJ Lutke, Myles Himmelreich, Katrina Griffin, Justin Mitchell, Anique Lutke, Emily Hargrove, Maggie May, Jessica Birch and Jacob Dedman a group who have experienced all the events commonly associated with FASD but have learned how to overcome obstacles, maximize potential and re-define success. They use their combined lived experience to work together as consultants, advisors, trainers, presenters, mentors, group moderators, committee members, bloggers, and as various university research project team members. As well, they develop and lead their own survey research on adults with diagnosed FASD, the first of which has been published, receiving wide interest by institutions and is currently being used to help focus research directions and questions. Their second survey research project has been widely presented, including to the NIAAA and is currently being written for publication.

Ullanda Niel

Moderated by: Ullanda Niel MD, CCFP (she/her)
Family Physician, Scarborough Centre for Healthy Communities & Participation House
Consultant Family Physician, Surrey Place
Professor, Department of Family and Community Medicine, University of Toronto & Queen’s University

Dr. Ullanda Niel is a Family Physician at the Scarborough Center for Healthy Communities in Toronto and Participation House in Markham. She also works as a consultant Family Physician for Surrey Place and she is a professor in the Department of Family and Community Medicine at the University of Toronto and Queen’s University. She has completed a fellowship in the Primary Care of Adults with Intellectual Disabilities at Queen’s University. She participated in creating The 2018 Canadian consensus guidelines on primary care for adults with Intellectual and Developmental Disabilities and clinical resources for the transition of youth with intellectual disabilities to adult care and other point of care tools. Through her community health center, she cares for new immigrants, refugees and people with intellectual disabilities/autism including work at an in-school health clinic.

Keynote Panel: Supporting Neurodiversity

Arden Duncan Bonokoski

Arden Duncan Bonokoski MSc (she/her)
Executive Director, STEPS Forward
Inclusive Post-secondary Education Society

Website / Website/ Facebook

Arden (she/her) is the Executive Director of STEPS Forward – Inclusive Post-secondary Education Society. STEPS Forward works in partnership with 9 post-secondary education institutions in British Columbia to facilitate the equitable inclusion of students with intellectual and developmental disabilities in the regular academic and social life of campus.

She holds a Bachelor of Science and Master of Science in Community Health Science, from the University of Calgary. She has been working to advance inclusive post-secondary education since 2009 and is passionate about confronting social bias in ways that enable marginalized people to live inclusive lives on their own terms. Arden lives with her partner and daughter in Chilliwack BC which is located on the traditional and unceded territory of the Stó:lō people.

Ali Parsa

Ali Parsa PhD
Founder and CEO of Babylon Health
Website / Blog

Dr Ali Parsa is a British-Iranian healthcare entrepreneur and engineer. He’s the founder and CEO of Babylon, the revolutionary artificial intelligence and digital health company. Babylon’s mission is to put an accessible and affordable health service in the hands of every person on Earth.

By combining cutting-edge AI technology and the best available medical expertise, Babylon gives people 24/7 access to affordable, holistic health services. The company is home to a large, passionate team of scientists, clinicians, mathematicians and engineers—all recruited from over 60 different countries. With over 3 million users, Babylon is transforming the way healthcare works across Europe, North America, Asia, the Middle East and Africa.

Before Babylon, Dr Parsa created Circle, which became Europe’s largest partnership of clinicians, with some £200m of revenue, 3,000 employees and a successful IPO. The Independent Healthcare Awards presented Dr Parsa with an Entrepreneurial Achievement award for establishing Circle. He was given the Royal Award for the Young Entrepreneur of the Year for founding his first business, V&G.

More recently, Dr Parsa was listed in The Times 100 people to watch. The Health Service Journal recognised him as one of the ‘50 most influential people in UK healthcare’. He was featured in the Maserati 100, a list that recognises game-changing entrepreneurs who are disrupting the world of business. Dr Parsa also won the CEO Award by Finance Monthly and ACQ5’s UK Game Changer of the Year. He is a UK Cabinet Office Ambassador for Mutuals and has a PhD in Engineering Physics.

Daniel Share-Strom

Daniel Share-Strom RSW (he/him)
Creative Consultant – Autism, TV Writer, Social Worker, Author
Individual Therapist & Chilling Group Co-Facilitator, Dori Zener and Associates

TedTalk / YouTube

Daniel Share-Strom is a Registered Social Worker who believes in a strengths-based approach to helping Autistic youth and young adults improve their mental health and live meaningful lives. Since 2004, he’s used his own lived experience of being on the autism spectrum to advocate for improved understanding and better social, academic, and employment inclusion of neurodivergent individuals through his public speaking, workshops, and writing. Daniel favours a positive psychology-based approach to helping clients become more satisfied with their lives on their own terms and is well-versed in mindfulness-based methods of mental wellness. In addition to his role as an Individual Therapist, Daniel is a facilitator for our Chilling on the Spectrum support and social group for Autistic young adults. A huge believer in the power of positive messaging in children’s media content, Daniel is the author of Do You Want to Play? Making Friends with an Autistic Kid and a writer and creative consultant on the TV show Thomas and Friends: All Engines Go!, where he helped create the joyful and adorable Autistic character, Bruno the Brake Car.

Muhammad Irfan Jiwa

Moderated by: Muhammad Irfan Jiwa MD (he/him)
Family Medicine Resident, McMaster University
Twitter / LinkedIn / YouTube

Irfan Jiwa is a medical resident in family medicine at McMaster University and is involved in various research and advocacy efforts at the Azrieli Adult Neurodevelopmental Centre at CAMH. As an older sibling of someone with both an intellectual disability and autistic spectrum disorder, Irfan has been passionate about seeking out experiences in the world of IDD to improve healthcare for people with IDD. Specifically, Irfan is interested in the education received by healthcare professionals and trainees in IDD and how this can be better optimized, supporting people with IDD to be more involved in research efforts and endeavours, and ensuring healthcare information and resources are made accessible for people with IDD. Irfan completed a B.Sc. in Chemical Biology at McMaster University after continuing on to gain his M.D. at University of Toronto and then returning back to McMaster for family medicine residency. After completing his residency in family medicine, Irfan will be pursuing an enhanced skills training in Developmental Disabilities to be able to better support patients with IDD in his future practice.

Keynote Panel: Advocacy in Advanced Care Planning

Tim Stainton

Tim Stainton MSW PhD (he/him)
Professor and Director
Canadian Institute for Inclusion and Citizenship.
University of British Columbia

Website

Professor Tim Stainton is Founder and Co-Director of the Canadian Institute for Inclusion and Citizenship at the University of British Columbia. He is a Fellow of International Association for the Scientific Study of Intellectual Disability (IASSID) and a founding member of the Ethics Special Interest Research group. He has published widely on issues related to IDD and frequently consults with Government and Community organizations internationally on issues of systems design and policy. He lives in Tsawwassen British Columbia and is the father of a son with IDD.

Arlene Wilgosh

Arlene Wilgosh RN BN (she/her)
Former President and Chief Executive Officer,
Winnipeg Regional Health Authority (WRHA);
Former Deputy Minister of Health,
Province of Manitoba

Arlene Wilgosh is a health system leader with over 40 years of health care experience.

Prior to her retirement, Arlene was CEO and President of the Winnipeg Regional Health Authority for 5 years. She held various roles in the Department of Health for the Manitoba government, culminating as Deputy Minister for 5 years. She was the first female and first nurse to hold this position. Her experience includes the public and private sectors, acute care and long-term care. Arlene is clinically trained as a Registered Nurse. In 2012, the Canadian Healthcare Association presented her with an Award for Distinguished Service.

Arlene brings lived experience to many discussions on disabilities as the mother of an intellectually disabled daughter.

Arlene has a wide variety of Board experience, in many cases bringing her lived experience to the Board table. She is Vice Chair of the Board of Directors for Reseau Compassion Network. Formerly known as the Catholic Health Care Association of Manitoba, one of its service organizations is St. Amant Center, a facility dedicated to programs for the intellectually disabled. Arlene is chair of Advisory Counsel for Community Venture, an organization under the umbrella of the Salvation Army, which provides support to adults with disabilities. As well she is a member of the NTG Canadian Consortium, focusing on adults with intellectual disabilities and dementia. Other Board positions include Manitoba Possible, formerly the Society for Manitobans with Disabilities, and the Grace Hospital Foundation.

Additional panelist and moderator details coming soon